Thursday, October 13, 2011

An autism-friendly Lion King performance: May we come too?

Recently, I got maybe ten different emails from people about the "autism-friendly" performance of The Lion King in New York City, which took place earlier this month. The Lion King geniuses and a panel of autism experts—including ones from Autism Speaks—joined together to make the show appeal to kids with autism, featuring softened volumes, dimmed lighting and quiet areas.

The performance is part of a new program by the Theatre Development Fund called the Autism Theatre Initiative, geared toward making performances accessible to kids and adults on the autism spectrum. Tickets were also offered at reasonable prices, as compared to the usual mortgage-payment-level fees.

I went ahead and signed up to hear more about future autism-friendly performances. The online form said "Please check the ages of the theatregoers on the autism spectrum with whom you'd like to attend." I clicked on Max's age group. I felt weird; he has cerebral palsy, not autism.

I am sure there was no person standing at the door of the Lion King performance demanding to see medical records. Max could have passed. As if!!! I'd never crash something like that. But I hope that someday, the program could be expanded to kids with other kinds of special needs. Children like Max, whose brain damage makes him sensitive to noise. Kids who have Sensory Integration Disorder, ADHD, PDD-NOS.

The show was a success. It sold out, and got good coverage in the press—as it deserved. It is absolutely, positively, unbelievably amazing that a big-deal show on Broadway show figured out ways to accommodate kids with autism. Anytime something like this happens, it opens doors for other kids with special needs. Which is why I hope future performances are more inviting to kids with other kinds of special needs.

Mind you, I am not saying I envy children with autism, or that kids with autism (or their parents) have it easy.

As a parent of a child with a disability that is not autism, I can't help but wish for attention like that for his special needs. I wonder if parents of kids with other diagnoses feel the same. "Autism is the new black!" a friend joked when we discussed the Lion King performance. She has a child with Asperger's, and feels it's "acceptable" to say her daughter has that—but her child also has mental illness, and if she mentions that to people, she said, "We're like lepers." She considers it normal to be both awed and wistful about the attention autism has been getting. As she said, "It reminds me of the debate about how much attention is focused on breast cancer versus other cancers. Again, it's not a competition—they're all good causes—but when you are living one of them, it's easy to envy the other."

It's easy to feel included, too. One playhouse in New Jersey recently offered a "sensory-friendly" performance for children, after being approached by two moms of kids with autism; it was open to all kids with developmental disabilities. AMC Theatres, in partnership with The Autism Society, have regular screenings also billed as "sensory-friendly" in theaters around the country. Oh, yes: Perhaps I should get off my blogging butt and make things happen in my neck of the woods. Advances for our kids rarely happen without advocacy, and it often starts with parents. But maybe, just maybe, The Lion King could bill the next performance for kids with special needs as "sensory friendly."

I've had inclusion on my mind in recent months; I want to get Max involved in activities with so-called "typical" kids, one reason we are trying Cub Scouts. But I think inclusion should apply within the special needs community as well. I have a child with cerebral palsy. You have a child with autism. Let's welcome them all to enjoy the pleasures life has to offer, oh Lion King.

33 comments:

Thank you for writing this as it's something many of us think, but aren't brave enough to say outloud. I think you're right about Autism having backing and "having it together". I'm glad they do because the families dealing with Autism need all the assistance they can get...as do we all. My husband and I talk about this alot in relation to Breast Cancer. Our son is epileptic and the same number or more people die from Epilespy related issues each year as from Breast Cancer. We were blown away when we learned that.

I'm glad for the families of children with autism, that the world is becoming more accomodating and understanding. That's wonderful.

But my daughter is 3.5 and undiagnosed. The same accomodations that would make movies, theme parks, etc, more welcoming to children with autism would benefit her, too. There's no way that a broadway show will eventually offer a "Children with Undiagnosed Genetic Disorders" day, so why not just do a "Special Needs" friendly performance?

Variety Children's Charity does special days at Sesame Place (google it---free tickets for families of kids with special needs!). The day coming up in November is for "children with special needs". In April, they offer 2 free days---one, again, for children with special needs, and another specifically for children with autism.

Though I can't speak for this event, typically you do not have to have autism to attend such an event - just the need (as Max has) for a sensory friendly environment. It just so happens that most folks with autism need such an environment. AMC theaters and Austim Society of America sponser sensory friendly movies once a month. It is wonderful. There is always a wide variety of special needs there. Besides the senosry friendly aspect, it is also a friendly environment where there are no stares or comments about your child's behavior.

I'm glad you said this. Special needs are special needs. Sure, there are kids whose issues are much more severe than others, but if a program like this has the resources to not limit their benefits, then they shouldn't.

I hate to say this, but I think some of this autism stuff is going the way of Susan G. Komen and pinkwashing.

Because our daughter has a rare genetic disorder with many areas of disability, we have always "horned in" on other groups' events. Our diagnosis has too few kids to be so organized, as would be the case with the many who are undiagnosed. Since she has common features with children who have ASD, CP, DS, etc., I just ask if she may be included, other times we just show up. If it is something that would be truly helpful to her issues, those putting on the event are almost always glad to have her participate. Even kids with the "official" diagnoses don't always fit neatly into the programs offered. Of course, we also like to help fundraise for any group we have benefited from.

while we're on the subject, it's not just children with impairments (CP, autism etc) who have problems with sensory issues like loud noises, and might benefit from the types of adapted performances mentioned. I'm an adult with CP and hydrocephalus, amongst other things, and have always suffered with hyperacusis (inability to cope with loud and/or sudden noises). Although it's got a lot better since I got older (I can go to the cinema now for rom-com 'talky' type movies, action ones are still out, but I wouldn't go to the cinema pretty much at all till about 16) it is still bad enough that though I'm a HUGE musical theatre fan there are some shows that I dare not risk for full price, bummer that my favourite musical is Les Miserables (lots and lots of bangs, joy!) Also though (perhaps because) I now have the cognitive/communication ability to control my fight or flight reaction (and just avoid/get out instead of freaking out outwardly), as I'm older it is harder to explain that I *know* guns (etc) are not real and the noise won't 'hurt' me, but that the sensation still distresses me to the point of intolerance, and there's not much I can do about it, besides get out till it's gone. Although controlling it in public is getting easier since a lot of shows now have signs saying 'contains gunshots/loud noises' etc as well as 'strobe lighting etc', so I can avoid and/or take earplugs and someone to hold my hand, it's nice to know that some shows publicise events that those with sensory impairments might ENJOY, as well. Here's hoping across the world these performances become as widespread as captioned/signed performances for deaf or hearing-impaired people (not that there's necessarily enough of those, but it's a start).

GREAT post. I think you are spot on here. I also think that calling things like this "sensory-friendly" makes far more sense and is far more inclusive. Sure, people outside the disability community may not understand, but those of us within it sure would, and (ostensibly, at least) we are the target audience.

I so agree, Ellen. I've really noticed the disconnect between CP and other conditions since I gave birth to my son with Down syndrome. The DS community seems to be much more cohesive and organized than the CP community because we don't have the same desire to "fix" or "cure" like some other condition-centric communities do. Neither CP or DS is "sexy" in terms of marketing, and we don't have a lot of celebrity advocates, so of course we lose in that realm, as well.

I've often wondered if the difference in public support of autism and breast cancer is related to the "visibly normal" aspect. Children with autism may not ACT like typical children, but they LOOK like typical children. Women with breast cancer are everyone's mothers, sisters, daughters, aunts, and friends. Are people more likely to embrace a cause that is more relatable?

As the parent of a child with autism who is almost 13, I'm not offended at all by your post. I believe that events such as the Lion King event should be open to any individual with special needs or sensory issues. My 10 year old does not have autism but is so sensitive to loud noises. I do agree that we need to come together as a special needs community and be more open to everyone.

I've had this discussion with my husband about the explosion of coverage on autism over the past 5 years. I'm glad there is more spotlight on it, but kind of sad to think that a lot of it has to do with the large amount of celebrities whose children are affected by autism.

As much as I understand your simmering frustration about autism receiving more attention than cerebral palsy, I can't help but note that autism awareness is still incredibly low. Your concerns are valid and personal, but I don't think they have it together. There are so many parents just like you with kids who do have autism and who still need to fight to get schools to integrate and encourage. So while I do agree that CP needs a lot more attention (whether it be media or organizations,) autism could have a lot more of that too. People always need help - everybody does.

I run into a lot of people who don't even really understand what CP is. Maybe part of the problem is that CP kids can have such a range of issues, ranging from barely perceptable to being wheelchair bound and unable to speak.

I agree with Janet, the Autism Society movies are called "sensory friendly" and they are always open to anyone interested. You don't have to show a card at the door!

Having said that, I've met many kids who have a dual diagnosis of CP and autism. The CP dx manifests in the motor and physical issues and the autism dx manifests in the repetitive behaviors, sensory issues and strong interests.

It's interesting that you should post this Ellen - my daughter Molly was born with CP but was diagnosed with Autism Spectrum Disorder about 4 years ago - and the ASD is a result of her CP. Basically, the brain damage from the CP has caused her to have behaviours that are very ASD. Like, for example I noticed Max during that iPad video grab your hand to get you to press the button when he was having trouble doing it himself, which is an autism-like behaviour. I think any "brain issue" diagnosis probably all have multiple cross-over behavioiurs and with Molly she just happens to be very strong in the Autism department - ie. she has never "played" with anyone socially (although she enjoys being around other kids), she's a little over-possessed by pushing buttons, music and numbers and she doesn't seem to see the point in communicating (although she seems to be capable of it). On the other hand, although she has sensitivity issues they are not of the noise or crowd related variety (more of the "hand-over-hand aversion" and sensory processing) so this particular type of performance would not be helpful to Molly either (even though she has the ASD diagnosis). What would be most helpful for her would be just a performance where the performers didn't mind if the audience made a few odd screaming noises or decided to sing along ;-) So yeah, I guess I agree that widening the "label" for these types of performances would be a great idea! Include as many people as possible!

This is one thing that I wish autism advocacy groups would do when they fight for change--fight for change for EVERYONE and not just for people who have autism. A disability is a disability is a disability. The changes that they work so hard for could benefit so many people, not just those on the spectrum. It's a shame that there's so much seclusion in an already secluded population. While I applaud their efforts, I wish they would expand on who is included in the changes they make.

Where I really find that this stands out is in "special needs" communities. In many of them, it seems that if you're not asking about ASD related things, you're largely out of luck. Sensory issues, for example, get lots of responses.

We also ran into problems with our IEP process - having a non-verbal kid with anxiety issues due to extensive medical problems was hard for them to figure out. Non-verbal always means autism, right? Trying to treat our very social little guy with behavioral methods didn't go over well, but they couldn't figure out what else to do with him.

My son has been diagnosed as moderately autistic. I have to say, if I saw your son/family at a show we were attending, I wouldn't care if he was autistic or not. And it's not just YOUR SON, I mean ANY KID. And it wouldn't bother me to see kids whose disability is not obvious (even if it's not autism) because they would be welcome in my eyes, too.

I think it's great that they did the special showing, but I think you're right...it's too bad that they singled it out as a show for autism (and my daughter does have autism). Where I live we have Marcus Theaters and they have what's called "Reel Movies for Real Needs". They have one showing a month and it's billed as

"A SPECIAL SHOWING FOR FAMILIES AND INDIVIDUALS WITH SPECIAL NEEDS

SERVING A REAL NEED WITH A REEL EXPERIENCEWe understand that sometimes it is difficult or uncomfortable for families with special needs children to attend movies together. Marcus Theatres Reel Movies for Reel Needs is a specially designed program to serve families with special needs such as autism or other challenges, who seldom attend movies.

A COMFORTABLE ENVIRONMENTReel Movies for Real Needs creates a welcoming and comfortable environment - lower sound, lights up - where families with children who need accommodations will be able to share the experience of seeing family friendly films at a theatre.

AN OPPORTUNITY TO SHARE THE MOVIE EXPERIENCEReel Movies for Real Needs is ideal for families who may not feel comfortable attending regularly scheduled shows."

I don't want to bring any unnecessary drama to your blog comments, so I will simply say thank you for making a point that very much needed to be made. It seems like there should be enough oxygen in the room for everyone, but that's not the world we live in. It should be, though.

Thank you for this post. My 14 year old daughter has a rare metabolic disorder that resulted in brain damage when she was a baby. Because of this she has cognitive impairments, but not a diagnosis apart from her metabolic disorder. At times I've felt like we didn't "fit in" in the world of disabilities and special needs, as if she needed an acronym to justify the fact she is special needs. As a previous commenter said, a disability is a disability is a disability.

I agree. We have many activities in our state for kids on the autism spectrum. I recently began researching special needs schools in our state to explore our options and only one in the state specifically mentions CP but many of them cater to kids with autism. Like you, I'm not jealous of those with children with autism. I just wish it didn't leave us feeling so "different" within the special needs world. We should all be on an even playing field.

I was bothered a little by the idea that autism is the new black.Not because you said it but because I actually had someone say that to me the other day while I stood at a playground with my son, she made a comment along the lines of my needing to relax. I explained him (like I often do) and she actually said that to me. I have 5 children, 3 having some form of special needs in some way. I wish the world could be a kinder gentler place for all of these kids.

Well, I would look at that "autism friendly" label as a kind of shorthand. Generally speaking, stuff that is "autism friendly" is "friendly to children who have sensory processing issues or are prone to sensory overload." But try putting that on a marquee!

I suppose they could try to come up with some new word that conveys that different way of functioning, but I can't imagine what it would be.

They weren't demanding doctor's notes at the door, were they? If not, just go and enjoy--what good for the autistic kid is good for the kid with sensory issues, too.

It's okay to be envious but you should also do something about it -you're the perfect person for it - and I agree with Felicia just go and enjoy--what good for the autistic kid is good for the kid with sensory issues, too.

Although I understand where you are coming from, I also see where the people who created the performance are coming from too. I don't think they *meant* to exclude other special powers, but autism tends to be a "hidden" special power...and the parents of these children ( me included)sometimes dread taking our children places because people just don't understand why we need the things we need. In my opinion, if an "autism friendly" performance is going to work for your child who has sensory issues, then that's awesome! The only thing that really matters is that YOUR child gets the things that he needs to make the performance enjoyable for him...and that no one looks at you funny if your child needs to get up and dance or whatever.

The website specifically states "The show was performed in a friendly, supportive environment for an audience of families and friends with children or adults who are diagnosed with an autism spectrum disorder OR OTHER SENSITIVITY ISSUES."

In other words, they already said that you can come too. You could suggest that they change the check box on their form, but other than that there doesn't seem to be much to worry about.

And by the way, PDD-NOS is considered to be on the spectrum of autsim disorders in the autism activism sites I have seen.

So much to say! I wish I could comment individually on your comments—I need to install Disqus one of these days.

Clearly, there are frustrations all around. I did not mean to imply that kids with autism have an easier time of making their way in this world. I know that, like any child with special needs, there are still many societal barriers to overcome no matter how much attention autism receives.

While I am sure the Lion King was open to children with other sensitivity issues, it was billed as being for kids with autism. I didn't see anyone from the show touting it to the press as being open to kids of all sensitivities (although I didn't do an exhaustive search). Bottom line: Sure, I could have brought Max. But I don't see any reason why it couldn't have been a "sensory-friendly" performance, as the Autism Speaks movie theater shows I mentioned are. That is my point here: inclusivity.

Hi, there. My name is Deborah Stein and I am the Coordinator for the Autism Theatre Initiative at TDF (the folks who put on THE LION KING). I just wanted to address some of the issues you brought up. TDF is a non-profit organization devoted to making theatre accessible to everyone, and to that end, the Autism Theatre Initiative was established. Please understand, however, that the funding received for this program was specifically designated for ASD, as were the evidence-based supports and resources used at the performance. TDF’s mission is all about inclusion, and we very much hope the success of this groundbreaking performance will encourage more opportunities for everyone, including individuals with developmental disabilities other than ASD. We recognize this need, and will continue to champion the cause.

Deborah, it is good to hear from you, and I appreciated what you said. I would be thrilled if there were future performances of this show (and others on Broadway) for children with all types of special needs. Please let me know if I can ever help in any way! Although, note, I cannot act.

As a mom of a child with Autism I couldn't agree with you more. Performances should be made available "sensory-friendly" as that is an issue children with autism and other special needs have. A special needs child is a special needs child. It doesn't matter whether it's autism or CP or Down's Syndrome. The fact is they are all special needs children and no one group should be singled out for such wonderful opportunities to experience life.

So glad to see you got a response from the theater. You are doing your advocacy work from right here. Keep up the great work!